Feature: Pain, Prestige and Embodiment

by Rosemary Talbot Behmer Hansen, MA, MPH

It’s estimated that tens of millions of women in the U.S. are dealing with unnecessary pain because doctors assume that, even if there is something wrong with them, they’re probably exaggerating their symptoms. Simply put, medicine doesn’t trust women to be familiar with their own bodies. [1]

There is “no shortage” of data that confirms that men receive superior management for chronic pain. [2] This essay will use fibromyalgia as a case study for assessing how gender identity unjustly exacerbates physical and psychosocial suffering for chronic pain patients.

Fibromyalgia Background

Fibromyalgia Syndrome is a condition characterized by chronic widespread pain and somatic symptoms. While the disease mechanisms are yet to be entirely understood, fibromyalgia has been shown to be due to an abnormal interaction of neurological, neuro-hormonal, and immunological systems. Symptoms include pain, fatigue, sleep disturbance, anxiety, depression, memory and mood deficiencies.As well as having genetic components, fibromyalgia can be triggered by psychological trauma, infection, and physical pain experiences. Newer diagnostic criteria reveal a fibromyalgia female to male ratio of 2:1, which is similar to those of other chronic pain disorders. There is no cure for fibromyalgia. Patients can sometimes find relief with pharmacological, psychological, educational or holistic therapies. [3]

History of Women’s Pain

“…the outlook for patients is rosier than you might expect given the condition’s perplexing reputation.” [3]

Long before chronic pain conditions such as fibromyalgia were coined, women who reported pain, distress and fatigue were given the diagnosis of hysteria. Latin for “womb,” hysteria in the 18th century was thought to originate in women’s reproductive systems. In the 20th century, Freud proposed that hysteria was a conversion of psychological distress, brought on by repressed memories that manifested in female bodies. Men diagnosed with hysteria were described as “weak, effeminate creatures” without the qualities that are seen as “appropriately masculine.” [5]

The term “fibrositis” was coined by a 1968 physician in Illinois to describe “a constellation of generalized stiffness, headaches, malaise, and tender points… [in women] who tended to be “worry warts.” The trigger for the exclusively-female fibrositis was believed to be “reckless emotion.” [3] In the late 1980s, fibrositis evolved into the diagnosis called fibromyalgia. The diagnosis allowed people living with chronic pain to find support from rheumatologists who finally saw their pain as a disease of the body, and not the mind. [5]

Criticism of fibromyalgia patient credibility was swift. A physician stated that people with fibromyalgia syndrome had real pain, but suffered from an inability to cope with both the intensity of their symptoms as well as, in general, the various stressors in their lives. [6] He, like many other doctors, believed fibromyalgia enabled patients to abuse the medical system. Indeed, Indiana University Neurology Professor John Kincaid estimates that about half of all physicians today do not believe that fibromyalgia exists—a notion that is contrary to the findings of countless researchers, the World Health Organization and the American College of Rheumatology. [3]

Disease Prestige

…diseases and specialties associated with technologically sophisticated, immediate and invasive procedures in vital organs located in the upper parts of the body are given high prestige scores… At the other end, low prestige scores are given to diseases and specialties associated with chronic conditions located in the lower parts of the body or having no specific bodily location, with less visible treatment procedures, and with elderly patients. [7]

This is the conclusion from a 2008 Norwegian study, which asked senior physicians, general practitioners and senior medical students to all rank 38 diseases, including cancer and diabetes, in terms of prestige. Fibromyalgia was ranked last by all three participant groups. [7]

Disease prestige can impact the quality of treatment a patient receives. Access to care, hospital funding, medical research and funding, and physician support, have all been associated with disease hierarchy. [8, 9] In a blog written by a physician who was diagnosed with fibromyalgia, she asserted that the primary reason why fibromyalgia research has inadequate support is sexism. [10] Her sentiment is supported by a National Fibromyalgia Association medical advisor, Dr. Patrick Wood, who argues that the complaints of fibromyalgia patients are dismissed because they are women. [4]

Physician Heroics

“…physicians value narratives in which they are portrayed as ‘masculine and extraordinary lifesavers’, reflecting deep-rooted heroic tales of Western culture.” [9]

When treating a patient in an acute, urgent circumstance such as during a heart attack, physicians are required to perform systematic medical evaluations and use highly technological interventions when time is of the essence. Studies have confirmed that many physicians find these dramatic moments to be of high interest. [9]

Fibromyalgia patients may inadvertently challenge traditional physician roles of being “extraordinary lifesavers.” Diagnosing fibromyalgia, in many ways, requires physicians to admit that they “just don’t know what’s wrong.” [11] This is a tough thing to do when Western culture associates medical certainty with physician prestige. Furthermore, treating fibromyalgia patients involves a longitudinal process of therapeutic trial and error. [4] These patients are not damsels in distress to be quickly rescued from the jaws of death; they may instead be viewed as challenging women who oftentimes fail to immediately respond to medical treatments. In short, saving the “weaker sex” from chronic pain is trying. [10] Accordingly, some physicians find treating patients with fibromyalgia “tremendously frustrating” and a “thankless task.” [4, 12, 13]

Embodied Suffering

“Sometimes [doctors] take out their frustrations on the patients and blame the patients for the illnesses… There’s a long history of this in medicine.” [4]

Women do not just suffer from fibromyalgia itself; they suffer from the sexism related to attempting to find and receive appropriate medical care. One physician argued that chronic pain becomes “involved in a lifestyle mix,” and that all associated symptoms become prominent “when the individual focuses on herself and her discomfort.” [6] The author follows this statement with a more overtly sexist remark: “it is mostly women who fall into this category.” [6] Similarly, some physicians who treat chronic pain patients report not trusting their patients or their experiences of pain. [13, 14] It takes on average about five years for chronic pain patients like those with fibromyalgia to receive a proper diagnosis. [16]

The term “fibromyalgia personality” is sometimes used to stigmatize fibromyalgia patients as inherently irrational and hysterical. One physician said, “You immediately know they have [Fibromyalgia], often even before they say anything, just from the way they’re behaving and their personality.” [5] It is of no surprise, then, that women with medically unexplained disorders have reported being met with “skepticism,” “feeling rejected, ignored,” and being “blamed for their condition” by their physicians. Women experience illness in “delegitimizing and stigmatizing” ways because both their moral character and their mental health are frequently questioned by others, “doctors in particular.” [15]

The doctor-patient relationship in adversarial instances like these may devolve into one of scrutiny, distrust and disgust. This unique dismissal of women’s pain as irrational, emotional, psychological, immoral, and potentially deserved, is not surprising from a feminist perspective. [3, 4, 16, 17, 18] In the fibromyalgia community, it is referred to as the “credibility issue,” and its consequences to the afflicted may include: psychosocial problems, refusal to seek medical care, self-blame and loathing, worsening of condition, and suicide. [4, 11, 19] Fibromyalgia patients may become subject to physical and moral scrutiny from friends, family members, coworkers, and total strangers. [4, 17]

In short, women with fibromyalgia risk being cast as bad women. They may be perceived as any combination of ungrateful, lazy, hysterical, after disability benefits, and manipulative. [6] Because they inadvertently challenge common societal narratives about physician roles, they risk causing their healthcare providers to feel frustrated, delegitimized, and even emasculated. We should therefore not be surprised that living with fibromyalgia can be “re-[traumatizing].” [19] Disease, gender and society interact, forcing those with fibromyalgia to embody the role of deviant womanhood.

Person Prestige

“According to a National Pain Report survey conducted last year, a staggering 90 percent of women with chronic pain feel that the health care system discriminates against them.” [11]

A quick, informal survey of my Facebook friends revealed a startling quantity of stories about pain dismissal and credibility challenges in biomedical settings. Regardless of illness type, many of my friends had been made to feel like they had become problems, rather than merely had problems: their cases were viewed as atypical, uninteresting, or altogether fake; their very beings were criticized. Thankfully, after relentlessly advocating for themselves, most of them eventually found affirmative, compassionate and appropriate healthcare services elsewhere. But what happens to those who cannot advocate for themselves? How do our collective societal values increase suffering for the sick and injured?

Stigma is unjust because it uniquely punishes already-marginalized people by treating them as social deviants. It enables xenophobia in society and ultimately jeopardizes population health. We see the effects of stigma in the Norwegian researchers’ disease prestige hierarchy list, too, when reviewing diseases with the lowest prestige: anxiety neurosis, hepatocirrhosis (cirrhosis of the liver), depressive neurosis, schizophrenia, anorexia, and AIDS. [7] When we consider the patient populations at risk for these diseases, it appears that the prestige of the patient matters when determining disease hierarchy: disease prestige impacts patient prestige, and patient prestige impacts disease prestige. We have seen this most disturbingly play out in the ongoing HIV/AIDS crisis, where patient nationality, race and ethnicity, sexual orientation, gender identity, age, profession, religion, economic status and other identities intersect to determine public sympathy for the afflicted and public support for global health interventions.

Whether we are discussing syphilis, myocardial infarction, breast cancer, substance abuse disorders, or any other condition, patient identity need not exacerbate patient suffering. There is room for improvement. We can start by challenging harmful notions of physician prestige, fighting problematic ideas of disease prestige, and believing that neither pain nor person is invisible.

Rosemary Talbot Behmer Hansen is an M.D. candidate at Rutgers New Jersey Medical School in Newark, New Jersey. She has both an M.A. in Bioethics and an M.P.H. with a major in Health Policy & Management from Case Western Reserve University (May, 2018) and her academic interests include issues of patient autonomy and medical decision-making. She lives in the Greater New York City area with her husband Ryan Behmer Hansen and dog, Franklin.